Wednesday, December 29, 2010

What I want for 2011.

The Mom part of Christmas was beyond rough. The five kids, 4 spouses, 3 grandchildren and friends part was sweet.
I am not sure what 2011 will bring as far as Mom and I are concerned. I pray daily that there will be peace for the 2 of us. I do know this horrid disease will not allow that to happen. Perhaps just learning not to react and perhaps building a wall around my heart and soul so each visit doesn't HURT so MUCH will work!
In 2011 my visits will be less frequent. I'll continue to pay her bills. Make sure whatever the nursing home tells me she needs will be provided. Cold, it seems very cold. I can no longer let this situation wipe me out for days. It is not fair to my 10 year old ,Heather nor my husband, Brad.
I hope and pray we all get through this disease with our loved ones. Thank God, He never gets tired of our petitions. Prayer for me is constant, giving "IT" to Him and NOT taking "IT" back is where I fall short daily.
God Bless you all and Happy New Year!

Friday, December 24, 2010

Santa came to visit

Since seeing my mother alone dose not work I brought an army this time. My husband, Sami the wife of Santa and my friend Heather and 3 of her friends. The girls had been at my house all afternoon baking. Then our surprise visitor arrived. After he talked to all the girls I asked if he would come with us to Baptist. I called them to make sure Santa would be welcome, they were thrilled. Off we went in 2 cars and arrived. Mother flirted with Santa, then asked who he was I told her Santa. True to form Mom was rude to Brad, ignored Heather and as soon as she had me alone attacked. Before we left I spoke to the charge nurse who informed me mother had been in bed all week and when My name came up she said, " I want to strangle her" So needless to say the boys can have Mom up for Christmas. I will not be joining them! She wins again! Yes I know it is the disease but it still gets to me. I gave her her gifts, kissed her on the ckeck and left. I hope you all have better luck with your relatives! Merry Christmas!

Wednesday, December 22, 2010

I want to be a kid...

I want to stamp my foot and kick some dirt and scream, "I don't want to!" as loud as I can!!!
But I am a grown up who is responsible so I won't do what I would like to and neither will any of you out in Blogland. We will take care of our loved ones who have this horrid disease until they pass away. NOT fair!

Sunday, December 19, 2010

Heather's virus

Stewart called yesterday he and his wife will be traveling in from Buffalo to stay with us Christmas eve and Christmas Day.It is a 5 -6 hour drive so even though Joe our oldest has assigned Stewart the job of bring Mom up to Joe's' house Christmas day Stewart feel he is doing enough driving.I would rather no one bring Mom to Joe's and it just be "the kids" and us. Rachel and Heather agree with me.
I have been praying how to handle this and doing my best to give it to God and NOT take it back.
Heather woke up at midnight and has been vomiting every hour since then. Her friend at school got this 24 hour bug on Wednesday. And as bad as this may sound if Brad or I get this we will have to stay home Christmas. I would miss the kids.
My plan is to take Mom her presents...no I really don't have a clue how this week will play out.
Brad has term for this kind of confusion he calls it " the speed bumps of life" that fits this for me...

Thursday, December 16, 2010

I don't want to ......

I will sound whinny because I am. I do not want to deal with my mother this Christmas! I don't want to visit the nursing home no matter how nice it is. I don't want to deal with her in anyway. I want to just pretend she is in AZ with my Daddy and I will send them their usual presents and they will send me money to buy their grandchildren and great grandchildren presents that way they don't have to pay postage. I want it to be like it was Dec of 2008. I miss my Daddy and I don't like this woman in the nursing home. I am tired of feeling guilty for not being a devoted daughter.
I HATE ALZHEIMER"S AND I HATE THAT DADDY IS GONE!

Sunday, December 12, 2010

Rachel's take on the crazy coat lady

My daughter Rachel posted this version on facebook...pretty funny...
It went something like this:
Old Lady #2 says to Old Lady #1 (my grandmother) "Is this the girl?" Old Lady #1- "It is."
Old Lady #2 tells me to follow her, which I do.
Old Lady #2 shoves an ankle length white winter coat at me and tells me ...she wants me to have it. I protest. She won't hear of it. I decide to thank her, take it, and then double back and return it to the nurses. I walk back down the hall and say goodbye to Old Lady#1. Crazy Nurse jumps out from behind the desk, grabs the coat, and yells "You can't take that coat!"
Old Lady #2 shouts "It's mine and I can give it to whoever I want!" Old Lady #1 says "You can't tell her what to do!"
Crazy Nurse shouts, "No! Because then the coat won't be in your closet and you won't remember and you'll say someone stole it!"
Insanity ensues. Mum and I quietly exit via the nearest elevator. Fifteen minutes later Mum gets a call that Old Ladies 1 & 2 resorted to fisticuffs, infuriated that Crazy Nurse had embarrassed me.
So even in a lock down unit and a well thought of nursing home Alzheiemer's patients can still make us laugh....kinda

Thursday, December 9, 2010

a little humour

Rachel was available to go see Mom on Wednesday.I gathered some winter sweaters, a musical Christmas tree and other things. We met at the nursing home. Mom seemed happy to see us. I told her I was going to decorate her room and clean it out. She and Rachel stayed in the "common room". Boy what a collection of stuff to clean ; TV guides from 5 months ago envelopes with nothing in them etc etc....Mom keeps crocheting I keep taking the afghans and give them to different organizations.
As we were about to leave a rather attractive woman very well dressed walked up to Rachel and handed her a lovely off white coat in a cleaners bag. She told Rachel she wanted her to have it. Rachel just looked at me. I thought the woman was an employee....WRONG!
Cindy, the charge nurse, flew around the counter and grabbed the coat from Rachel and told the pretty lady(she is a patient not a staff person) she could not give her clothes away.Well as Rachel headed for the elevator my Mom, the lady and Cindy got into a yelling match about whether or not the lady could give her own coat to whomever she wanted too. We got in the elevator as the screaming escalated.
Half way home my cell phone rang it was Cindy she was afraid Rachel was embarrassed by the scene. I told her, " My mother is in a lock down unit with other people who are NOT quit "all there" so nothing would surprise us." I did call Rachel she was embarrassed not for herself but for her Grandma and the pretty lady.
Joe came over later and as I told him the story he told me that coat had been in Mom closet and she wore up to his house for thanksgiving. I wonder what Cindy will do if I tell her about the traveling coat?
Oh, other than the coat incident the visit was sweet.

Tuesday, December 7, 2010

catch up

Depending on which family member you speak with there is a different view of how my Mother handled Thanksgiving at Joe's house. Joe thought other than the driving; for him it meant a total of 4 hours on the road, IT was lovely. According to my newly married Rachel and her husband, Dan, Mom really didn't have a clue. The dinner at Joe's was with most of the family which included my x husband. Who she thinks I am still married to. Rachel and Dan said she was more childlike than ever.
Last week I spent 5 hours attempting to get the Veterans Widows' pension straightened out. We shall see if it is fixed.
To be honest I have had so much going on to get ready for Christmas and even more in my heart and soul I have not seen Mom in 3 weeks. I just can't get through the emotions.
Several of my friends lost a parent this year. Maybe that is because we are all getting older ourselves and our parents are pretty darn old!! Death is part of the whole picture. Funny thing is I am a Christian I should be at peace with death and what happens next. But the lose of loved ones is still very difficult.
In regards to my Mom it is worse watching her "melt" away is than her passing.
My heart aches...I know all of you have the same ache. I sometimes think death would be easier on some level. Alzheimer's just takes our parents a little at a time.

Thursday, November 18, 2010

to much

I believe I have mentioned Daddy was a retired WWII vet, he served our country honorably for 25 years.When he was old that translated into nice pension. When he died last year, based on who knows what, My Mother received 64% of Daddy's military pension and is also entitled to an additional "Widows pension" that is a big $97.98 a month. Which of course is another batch of paperwork. Immediately upon getting her medicaid paperwork done that pension was applied for an sent off to the Vet. Adm.
It has now been 10 months and for the 5th time I am submitting paperwork. This time I had to write "why and what for" I needed to submit a complete accounting of her "income" for the last 12 months. the is no income to keep because the nursing home takes every penny and why she could use the big amount of $97.98.
Since there is no life or burial insurance and there was no savings it would be nice if i could bank some money to bury her when the time comes. A friend assures me Medicaid would bury Mom. Here in NY the most basic funeral starts around $2500 I would have to borrow the money.
After spending 2 1/2 hours filling in more paperwork I cried and cried and cried.
My Daddy served our country and it seems to me this amount of money for his widow should not have to be fought for by myself or anyone else.
When I saw Mom Monday I mentioned this to her ( stupid me) and she got very confused. After filling out and writing, my husband held me while I cried. Brad is all ready to get our congressman involved. I sent off 6 forms completed a 2 page letter from me. I hope this time it will work.
You know taking care of my mother's business is draining because she can't help and it reminds me of the loss of both Mom and Dad.
After feeling so sad I get angry I didn't sigh on to do all this stuff. They were supposed to have everything taken care of so that whoever was left standing could either stay with me or in a lovely little apartment. NOT
The good news however is that since Brad, Heather and I are go out o town for Thanksgiving; Joe is picking up his grandma for Thanksgiving Day.
There are so may sides to the death of one parent and Alzheimer's claiming the other. For me I get angry, sad, tearful and many other emotions. When the dust settles I know in my heart that no matter how much is involved in my mothers' last years I'll do it all. Why? Because underneath all the bad times, I do love her. I know in my heart I am doing what is right, what the Lord wants me to do and Daddy would expect nothing less.

Tuesday, November 16, 2010

Pretty heavy thoughts

Sometimes just posting what I write my 3 older kids is less painful than recounting an event...
"Stewart and Rachel, I am sending this to you both and hope your reading this will save my heart from having to repeat all this to you both about the visit. Joe and I took your Grandma to lunch. She looped and had a "peeing" accident. Mostly she was quiet..

Hi Joe,
I did not get home until after 9 I called both your numbers but got voice mail. Brad only said you wanted to discuss Grandma.
I can tell you it is very difficult to watch her dissolve before my eyes. I am not sure which is more painful and sad her being nasty and mean or her being so childlike. When I returned her as we walked toward the elevator she grabbed my hand very hard and simply said, " I hate it here." I squeezed her hand and just said, "I know."
When we got up to the second floor we got out and she looked around and asked where her room was so she could change her clothes. I pointed her in the direction kissed her and left. I cried all the way home.
For some reason her behavior reminds me of the scene from Wizard of OZ when the witch has water thrown on her and she yells, "I'm melting, I'm melting!"
I was told how difficult this would be; Alzheimer's has no rules nor a pattern each person is different. For most, so I am told by the "experts" she will gradually forget us and retreat to a world only she can get too.
Sadly I think that will be sooner than later.
I love each of you very much and pray with all my heart this does not happen to me. Later, Mom"
IT is not easy having a parent ill, I almost think when Mom had cancer and went through the chemo it was easier than this. At least with the uterine cancer we knew how to fight it. There is no fighting this disease it will take her no matter what I do. Even though we have not always gotten along, there were years when I was little she was all I had and I held onto her hand when I was afraid. Now the rolls are reversed only I know I can NOT protect her from what is happening. Do you think she knows that she is "melting?" Do any Alzheimer's patients know they are dissolving before our eyes?
When I look into her eyes these days mostly they are blank,sometimes angry and for a brief moment I think I see fear..
I can't imagine what it is to be in the mind of an Alzheimer's victim. Victim is an accurate description. Why? I have decided Alzheimer's attacks like a thief in the night; mostly to women who are over 75, it does not care about race, social status or anything else. Those who have been "attacked " have no way to get away.It traps them in a world where eventually they live ALONE. There is NO amount of money that will free our relatives no amount of medicine or care that will change their path. They will evaporate, they will melt away and we WILL LOOSE our loved ones.
Who they once were will be only memories, that is all we will have to hold onto. Maybe that is why there are so many tears?As I have said since the beginning of this blog "Alzheimer's Is HORRID!

Sunday, November 14, 2010

a letter and more

As I have said before we have 5 kids between Brad and I. Joe 41, Stewart 33, Rachel 28 those 3 are mine, Todd 36 Brad's and Heather almost 10 ours. It has been a rough year and I have not always kept in touch with family as I usually do. I just sent the following letter to a few family and friends. Writing down in a brief note helps put the the last 15 months into a nutshell and helps me find some peace.
" Dear.....
On my google page it has a countdown to Christmas, which today said 40 days. Now I don't know about you but I am still trying to figure out what happened to Spring and Summer. I am so sorry for not keeping in touch. Facebook is about all I have time for these days. When I review the last 15 months since Daddy died I realize life has been off the wall here in Ballston Spa.
Just in case you are curious there are many people who have not heard from me. The sadness until recently was pretty overwhelming. I see why people used to wear black arm bands to denote a family death. It would have made it easier than explaining why I have been so sad. I didn't know I could cry so much. For me it seemed like I buried both parents.
To be very honest I didn't realize until a few weeks ago that I truly have been in mourning. Daddy was one of my best and dearest friends. He was for me the perfect Daddy. Leaving me with a Mother I seldom got along with and now who not only has Alzheimer's but continues to be mean and when we are lucky nice. Even though she is in a nursing home she is still very much part of my world. She takes a tole on all of us. Poor Heather sadly was Mom's last target. Heather will most likely not go visit her Grandma again.
And then there of course so many deaths, 14 in all, my surgery and yes the shoulder still hurts and there are days when my whole right arm is swollen. Of course the newest twist is Brad's broken foot. He is on disability for at least 4 weeks or longer. Of course that means another cut in pay.
Please know , I think of you all the time.
Email, facebook, call, drop a snail mail note let me know when you are home and have a few minutes to talk. I have called a few times but reached an odd voice mail and did not leave a message, I hope everything is okay.
Hopefully we can connect sometime before the year ends. We are here for Christmas and in Massachusetts for Thanksgiving.
Love you all, Jewels"
I hope that helps those who wonder how I have been, reviewing it just makes me feel tired.
I did see Mom the other day she is not as angry when we are in the "common area." She seems more childlike or maybe childish.
Since she appears to have no since of time Joe and I are taking her out to lunch on Monday. Discussing the holidays seems pointless. We shall see how that pans out... In the meantime I just want to find a quiet place so that my heart and soul can find peace and quiet.

Wednesday, November 10, 2010

hmmm for some reason....

It is very odd how this disease affects me. Even though the last visit with Mom was okay and actually sweet I somehow dread going again. I suppose it is because I have no clue what will happen.
When she and Daddy were in AZ. I begged them to come here for years. they choose not to. Now she is 15 miles away he is with our Lord and I dread yes DREAD having her involved.
We are having a Church Thanksgiving dinner Saturday. She went with us last year and had a good time. I have her ticket but I am afraid. Nervous, sad and generally over whelmed at the holidays being here already.
My new son-in-law's mother passed away right before the wedding to my Rachel. He would give anything to have her back for the Holidays. I wish ....anyway this is not an easy time. I feel like I am on an emotional roller coaster.I really don't wish her to pass to the other side BUT I have to admit for the rest of the time Mom is here it will only get more difficult. Or maybe I am just having a bad day...

Wednesday, November 3, 2010

my birthday

Sigh, it seems that these days the term "bitter sweet" applies to all events that once included my parents.
The sweet: My 60th party was full of 40 friends and family. Great music provided by a friend who is a musician, the best chocolate cake anyone has ever eaten. To my surprise lots of presents.My party was a wonderful success!
The bitter part: no call or flowers or card from my parents.
Now the next hurdle Thanksgiving...Odd they were in Arizona for 23 years and never flew out for any thing, Stewart and I were the ones who went west. So why should it break my heart that Mom is not going to be with us. We are (if all goes well with her) taking her out to dinner the weekend before Thanksgiving.Even though Christmas is less than 2 months away I can't even start to think of that holiday.
And just in case you were wondering there are still and will be until she passes; bills, phone calls and worries. All which I have to attend to frequently.
Since the retreat my heart and soul are more at peace. Thank you Lord!

Thursday, October 28, 2010

the visit was sweet

Feeling charged and at peace after the retreat Tuesday I woke up and the Lord let me know it was time to visit. I had not seen Beverly since her attack on my sweet Heather. I prayed all the way down.
When I arrive and Mom is sitting in the "common area" it is much more likely that our visit will be okay. EVERY time I visit in her room it turns NASTY! So guess what? No Mother in the "common area." I took a deep breathe and headed down her hall, which oddly enough is called Harmony Lane.
She saw me she actually greeted me with a smile and kiss. Our visit was sweet only briefly did she start about being in prison but she stopped herself. I just kept talking about something else.
I kept it short we spoke about nothing really; it is the safest. I don't bring up anything of consequence or any subject that might bring on a fit of anger. I kissed her goodbye told I would see her soon.
Now you would think because the visit was sweet I would be happy. No, that little voice, call in "the Enemy" or whatever you want started the moment I got into my car. IT said," The boys are right you should have kept her at home, Why is she in the nursing home? She is so sweet. You are a horrible daughter!" ....you get the drift.
My mother is in the nursing home because she is in level 2 in the middle; there are 2 views of this Horrid disease 1-3 or 1-7 grading. It is eating her brain and I never know what will be her next word or action will be.
My heart breaks. I KNOW this is where she belongs....but.....this is not how it was supposed to be in her last days...and that is when the tears begin again and again.....

Monday, October 25, 2010

Peace

This past weekend I went to a retreat with the ladies from my Church.The past with my mother was anything but Donna Reed. When I admitted the other day to blogland and myself that part of the pain was accepting that I wish the Lord had taken my mother instead of my Daddy last year.
That being said, this weekend for me was a hoping to find a way to come to peace with the past and my mother.
Several things happened that worked on the healing of my heart and soul. After lunch on Saturday a few of us went swimming, we talked about our daughters and body issues general stuff and then our mothers not specifics but the general events that were painful. One of the women also had a mother with Alzheimer's; it was good to face someone who understood the anger and the depth of the sadness that this disease brings to each of us. We spoke of the words our mothers can say that cut us to the core.
It really doesn't matter that the disease aggravates the personality the words still hurt. Again there is comfort knowing one is not alone in this situation.
After a prayer meeting we broke into groups, my little group shared how at one retreat it was suggested that everyone write what their hurt, anger, frustration etc was then place that in a bag and leave it a the foot of a cross that was at the retreat.
Later Saturday night one of my roommates and I talked for 3 hours I did a lot of crying. the depth of the conversation was more intense than I had ever done mostly about how ...well that doesn't matter. I then wrote a letter tore it up into tiny peaces and left it at the retreat. I feel at peace now. I actually want to see Mom. I know she will still attack me, I know that sooner or later she will forget who I am. But for now for the moment my heart is at peace. Praise the Lord! John 16 vs 33:"These things I have spoken unto you, that in me ye might have peace.In the world you shall have tribulation: but be of good cheer; I have overcome the world."

Friday, October 15, 2010

thinking about

It seems to me that as my birthday gets closer and then Thanksgiving then Christmas my heart and mind are at war. Having a birthday on Halloween is not easy when you are little , kids don't want to come to a party and miss trick or treating. There were a few parties some were full of kids other s just a few. This year I turn 60 so I am throwing myself a party!
The other holidays are being figured out but the sad part is Mom will not be staying here like last year. OF course last year was the first time she was here in 24 years.
I spoke with a friend today about his anger, how giving it to God is the right thing BUT that it doesn't take much to get angry all over again. Then you give it to God again and again and again. So now I am thinking it really isn't anger anymore it is a profound sadness. Of what was supposed to be as my parents years passed by.
I waited and begged year after year for them to fly back here to the east coast. We all offered to pay their way but it just didn't happen there was always a reason and now it is to late.
Mother and I have moments maybe even 40 minutes before it gets nasty. I remind myself over and over again I at least have her here. Several of my friends and my sweet husband have buried their mothers. How will I feel when she checks out of this world? Where will she go? She says now she hates God.. I hope that is the disease and not the truth. I wonder when the peace comes and when does it stay. I told a friend there are weeks when I am not sad or angry but I think that is a lie I tell myself because I don't want to feel the depth of dis pare that this horrid disease has brought into my life.
When she and Daddy were in Az. and I would visit it was hmmm.. no real words perhaps it was safe. Safe in feeling they were going to die in each others arms and I would become an adult orphan life many of my friends. There would be a simple funeral and I would sort through there stuff and move on with my life. NO didn't happen that way..No gentleness just loss not only of the world's best Daddy but the loss of ever having a chance to find a peace with MOM.
What is there to say when your only parent can no longer be part of the family gatherings. Why when hurtful things come out of that person's mouth do you have to right it off, "it's just the Alzheimer's talking!" I want to swear so loudly I want to scream...I want it over...forgive me but that is the awful secret that I have never admitted to before this second..I want it over now. I am tired and sad and crying again.

Friday, October 8, 2010

forgive my typos

Hi there, I am so strung out when I write here in blogland that I do not take the time to prof my writings sorry about the typos. The last post was actually an email I sent to my sons I copied and pasted but after I posted and read the final post I realized I had not changed some of the wording.. Anyway so sorry... This situation just makes me crazy!

She was just nasty!

Joe couldn't come as planne dfor the dinner with Mom last night. I do understand work and supporting his family comes first. I brought my friend Samantha along. There was a little more traffic going south on 50 than I expected so we were a few minutes late .
Beverly's mean spirit immediately started by telling Heather she didn't like what she was wearing and why was she wearing something so strange. Heather fought back the tears and she told your Grandma that it was the dress she wore in her cousins wedding and that she had gotten dressed up for her (meaning Grandma Carey). Sami and I told Heather to spin around so Mom could see how cool the skirt is....Mom smiled and stopped her nastiness UNTIL...
We got in the car and Mom started in on me... Why did I have her car? How she hates the prison, Why is she there etc. I went about 10 feet, stopped the car and informed my Mother that I was not going to listen to her attack me so she had 2 choices she could be nice to me or she could go back to her room.
She swore under breathe and said, "I guess I have no choice, I'll be nice." I realize she does not do this shit around my sons, or Rachel nor most other people BUT i seem to be fair game, this is why I am a wreck after most visits!
Rachel arrived a few minutes after we did to the diner.
Mom had a drink and for the next 90 minutes she just "looped" about a variety of subjects.
I saw her 2 times this week.. I am done for a few. I hope and pray her mental state which is like her Mother's during her Alzheimer's in NOT MY path!
I HATE THIS!!!!!

Wednesday, October 6, 2010

another visit ...

Off Sami and I went to see the Mom...I stopped and got her black coffee and 2 chocolate donuts from good ol' Dunkin' Donuts. Mom was sitting on her bed just staring off into no where when we arrived. I explained I needed to do an inventory of her clothes before the snow flies and she and Sami headed for the lounge. How can a space that is 10x12 get so filled and so cluttered???
I had once again been called about the disappearance of cotton panties. I went through every drawer and found all but 2 pairs which I assume were in the laundry. I then tagged each drawer with the contents so Mom would know (hopefully ) where to place her clothes. I know the laundry does not have time to do laundry like I do at home but several of her white undies were gray.SIGH!
This woman once ran the OR of one of the biggest hospitals in Southern California. On some level this all must bother her. Or does it? It certainly plays havoc on my soul and heart. I came home and sobbed and was in major dis pare for the rest of the day.
Joe, Rachel, heather and I are all over our colds so IF nothing gets in the way we are taking her out for Chinese dinner on Thursday.
There are 78 days until Christmas I am dreaded them when it comes to Mom. I miss Daddy and I miss her.

Friday, October 1, 2010

who is?????

Sigh....another call from the nursing home telling me Mother cotton incontinent panties have disappeared again.. What or who can be taking her undies??? Plus there is a shopping day put on by Marshall's and TJMax's and her aides' have said she has gained weight and needs new cloths but hey where is the money supposed to come from to pay for the items??? They take every penny every month...I don't want to do this anymore. I don't want to be her mother I have been stuck in that roll since I was 3 years old!!! I hate how guilty I feel at least I still have my mother well I have her shell....I hate the fact that Daddy died first. Life is not always easy...

Wednesday, September 22, 2010

aawwww

It's been 2 weeks and the Lord let me know it was a time to go visit Beverly. I DO NOT go alone , I picked up yellow roses (Mom's flower of choice) then Sami and off she and I went. When we arrived the sitting area was empty off we trotted to Mom's room. The nurse was giving her some meds.Each time I visit I swear she has aged 10 years. The first 20 minutes wee okay other than the loop...Mom must have asked Sami to sit down 15 times. Then she started in.....I held my tongue, prayed then looked at Sami, kissed Mom good bye and left.
Something about visiting her while in her very small room makes for bad visits. The suites are lovely however the resident must be able to do private pay 50% of the bill. The monthly cost for Baptist is $13,789.22. Had my parents made better choices she could have one of those rooms. There was no savings, no insurance and my mother was/is a chronic gamble and went through about $500,000 in 20 years. Anyway from her perspective her bedroom is a prison then gain on days like yesterday her anger over being there is pretty intense. Of course no matter what I know to be true I feel QUILTY!
That's why this blog is call Alzheimer's is horrid!

Friday, September 17, 2010

no money

You would think after 14 months and sending out countless numbers of your POA that the bill collectors would get the message, "THERE IS NO MONEY TO GIVE THEM!" I do my best to be pleasant but who in their right mind gives a couple of 80 plus year old people an unsecured credit line of $10,000. The balance at time of Daddy passing last July was over $6000 . HSBC has said they would be glad to accept a mere $2000. Guess what there is not any money...sigh!

Wednesday, September 15, 2010

communication with you all

Hi there fellow bloggers,
Perhaps it is because I have a Mac or who knows. i have read all of your blogs and have written comments to most then the weird box shows up with odd letters I fill it in then hit the key then I get an Error message...
So for those who wonder if I read what you all share I do and believe me there are moments when what you say is exactly what I need to hear. I hope my words help each of you, time to do some laundry. God Bless, jewels

Sunday, September 12, 2010

Wow what happened to...

The thing about life is this,"sometime life gets in the way of living."I can not take credit for that sentence but when I realized I have not blogged in over a month I was shocked. Believe me there has been plenty to say.
The week before the wedding was crazy busy. The big event was Rachel,
bride to be, Krissy, my life long friend and myself picked up Mother. Then we took her out for manicure; not cheap when you add 2 pedicures (Grandma and the bride) tips for me and a french manicure for Krissy.
Then while I attempted to cash a check to help cover the expenses. If this was a blog about how I hate B of A I would say more. Anyway, Kris and Rachel delt with finding an outfit at Peter Harris. By time that was accomplished Mom was pretty tired. Off we went to the lovely diner across the parking lot. We all had a drink to toast Rachel then had a hardy lunch. We kept Mom out for about 4 hours. I am not sure who was more exhausted her or me. All in all her behavior was that of someone suffering with Alzheimer's...oh yes, that would be her. We took her back to her Prison as she calls it and we headed home.
I choose not to have my mother at Rachel's bridal shower and felt a little guilty.
The day of the wedding arrived and Stewart, the middle son, and his wife Carolyn picked up Mother. Stewart and Joe took charge of Grandma while I enjoyed my daughter's big day. (pictures will follow). It was odd my x-husband and his family was there and so my mother thought it was my wedding to him. At one point she asked Krissy why I was a holding another man's hand ( that would be Brad my present husband). Mom and I spoke a few times but Praise God the kids and even my x husband kept her busy.
Before the wedding I saw her 6 weeks in a row. Each time she would tell me that she hadn't seen me in months. After the wedding Brad, Heather and I took off for a much deserved 2 week vacation. Joe became the contact for the nursing home while I was away. Thank heaven there was no emergency. It was nice not thinking about Beverly for those 2 weeks.
But immediately upon my return there were letters about her finances and some small problems at the nursing home.
When Heather and I saw her after we got back from vacation the first thing out her mouth was, "housekeeping stole my panties and now I am wearing paper diapers! you need to fix this right now! Yep, it was great being back. Do you know that medicaid does not pay for clothe incontinent panties? Do you know that 6 cost $68.50? Not a big deal IF there was money in her account BUT the nursing home takes every penny and the additional VA stipend of $96.25 will take another 6-9 months. If my husband had not hand a major 45% paycut 18 months ago I would have no problem with the extra things Mom needs once in awhile. Right now there is no extra money in my budget. Another reason to save and plan for our old age!!!!
When I left her last week I spoke to her doctor for the first time since admission in January. It took me a few minutes to get around to what I needed to know but her figured it out I just had to make sure this is where she belongs. Because as much as I hate to admit it I still feel guilty as sin. After a few minutes of basic Alzheimer's talk her doctor told me. 'Jewels, your mother has only part of her mind working only part of the time. This is where she needs to be so she can be safe." Then he added, " and it is okay if she hates you and feels this place is a prison because for her it is." WOW!
The newlyweds are on their way here now for dinner, Joe and I will take Mom out this coming week for dinner, heather is back in school a big 4th grader. And Brad and I are holding our own with the Lord right there with us.
I still hate this disease but thanks to all of you in blogland I know I am not alone!!!!

Saturday, July 24, 2010

a little better

This was just posted an article, “Top 50 Online Resources for Families Coping With Alzheimer’s” ( http://radiologydegree.com/top-50-online-resources-for-families-coping-with-alzheimer%E2%80%99s/ ).

As for my Mom I have seen her 3 weeks in a row briefly and never alone but the visits are okay. All most sweet sometimes. There are moments when I feel clam and can deal with the endless amount of paperwork I get regarding her care and insurance and the pensions that still have not been transfered.

My oldest daughter will be married 2 weeks from tomorrow. We are going to bring my mother ,Rachel wants her there. Please everyone prayer that she stays in a "good place." We have a back up plan IF Mom starts to get vulgar. And why is that? She never ever said a profanity in her life and now when she is wherever her brain takes her what comes out of her mouth would make a sailor blush! She also never ate sweets or used salt now those are her favorites! The goal is to take her shopping and get her nails, toes and hair done the Thursday before the wedding. She had to redo the health care proxy and the nursing home called me to let me know I of course am the one that has been assigned that duty. YUK! Being my mother mother is not new to our relationship but I don't really want this job. BUT I am the only one so .....I hate this disease it is just plain HORRID!

At P/T the other day a lady was in the waiting room I looked at her and was in awe at home together she was physically and mentally and she was 5 years older than my mother. I thought that is how it would be with Beverly but then again I figured Daddy would be here still too! Never know what will happen that is for sure!

Friday, July 2, 2010

more mail more bills more frustration

This is short and sweet. I HATE ALZHEIMER'S!!!!! There are moments seconds when it is okay but overall this disease sucks!!!!! That's all I have to say....well that's not really true but my gift for this weekend is NOT to obsess about this part of my life!

Tuesday, June 29, 2010

a good visit

Well yesterday Rachel and I decided to go to the nursing home. I prayed a lot, since I never know how I will be greeted. When we got out of the elevator I looked right at my mother and did not recognize her. Rachel had to point to her. Why? It has been 2 months but I swear she has aged 10 years. The visit was fine she cried and held my hand, we had a few "loop" conversations but all in all it was nice.
Rachel's wedding is less than 6 weeks away, as it gets closer we will pray that Mom can stay calm and attend. Rachel really wants her t here now and so do I.
My heart is not as heavy but this is still HOrrid!

Tuesday, June 15, 2010

i don't want tooooooo

There seems to be several sides to how to behave with or to one's parent who has Alzheimer's. There are many who are able and do an amazing job of keeping their loved one with them to the end, others like myself who only last months before a nursing home comes into the picture and then there are those who from the first moment find some where else to keep the person they have called Mom, Dad or ???.
Even when your parent is in a nursing home. There are visits or calls from your children who once again saying, "Why did you put Grandma there?" Good friends who say,"She really doesn't seem that bad!"
How do you explain that even though you know in your mind the hateful words the blank stares the confusing conversation that my son Joe refers to as the"Loop" are exhausting. They are not really that person who raised you. Let's not forget the paperwork that seems endless when you are the POA of our loved one.
I am a Christian and I know in my heart the Lord understands how I handle this horrid disease. I do have so much repecct for you out there in blogland who seem to have seem to come to a quiet peace. Perhaps when more time goes by it has after all not been year since Daddy died and I found out the truth out about my Mother and her horrid disease.
I want to go back in time when Daddy was taking care of Mom in AZ and I would come out to visit and all was simple. I don't want tooooo have a Mother with Alzheimer's I want her whole again.. BUT she is gone and my family is left with a woman who is daily slipping away into her own world.

Wednesday, June 2, 2010

I can drive again

Mu surgeon said i can drive again so No excuses so I need to go see Beverly. The nursing home called today to tell me she fell naked outside her bathroom door. She is fine just a little embarrassed. Rachel and I are going to visit next week. Joe just saw her , Stewart is on vacation. While at the movies with Rachel yesterday there was a granddaughter probably 25 ish like Rachel with her grandmother holding hands heading into the same move we went to see. "Letters to Juliet" my heart was sad. It doesn't go away the heartbreak just hangs around.

Sunday, May 30, 2010

don't ask

I just spoke with Joe about stuff nothing really important. It didn't take long to ask about if I had seen his Grandma. HE hadn't seen her since her birthday nor had I. Stewart hasn't been by either and he and his wife are getting ready to move so he will not be visiting much more. Rachel and I were there on Thursday doing paper work but just could not work up the "muster" to see her. Damn do I feel like a crap daughter.

Thursday, May 27, 2010

last of the ...

I am superstitious. I just gave the nursing home what appears to be the last of the paperwork for my mother's pension transfers. We shall see if that is true or not. I just could not make myself go up to see her....I feel so guilty my future son in law and my oldest daughter are at the hospital and his mother's bedside every day and has been for almost 4 weeks waiting, watching her slowly die. I can't even muster the courage to see my own mother. Life's a bitch sometimes!!!!
I wonder how she feels does she even know we have not been there ? Does she miss us? IS she sad? Who knows ...

Friday, May 21, 2010

$$$$$

My wonderful Daddy worked all his life as did my mother. Now that he is passed and she is in a nursing home it has taken hours upon hours to get the funds transfered to the nursing home. I can't tell you how many hours I have been on hold and transfered or the number of copies of my POA have been faxed. The social security check was one lone piece of paper but private and military pensions of my goodness!!! Getting mother her medicaid number took almost 4 months. I am greatly relieved that has finally been achieved because getting invoices for over $40,000 from her nursing home was a little scary!
Supposedly I will be receiving forms from the military and Daddy private pension within the next 10 business days. Then just one lone trip to the nursing home for accounting and myself to sign and that part will be over. We shall see....

Tuesday, May 18, 2010

sighhhhhh

IT is sad to say that there are days when I don't think of my mother. I always think of Daddy.
I had surgery on April 29th and I felt like the biggest baby. I so missed my parents being there when I woke up. The pink roses Daddy would have had waiting for me. Mom talking to the doctor and nurses making sure they had done a good job. I sent her a mother's day card so did Heather. I did not call. I have not got back to see her since her birthday the 22 nd of April. I really really hate this disease. I am affraid of who she will be when I go again. So I don't go I don't call then I justify my like of visits by her poor mother behavior when I was a kid. it is an endless circle of quilt and sadness. My middle son wants to know why she is there and not in an Assisted living place where she has more freedom. I again have to explain about this horrible disease and the the Grandma he knew when he was little is no longer around. I won't be able to drive for several more weeks that is my excuse for now, oh there are people who would be glad to take me but..But I just can't make myself go.....yep Alzheimer's is horrid for everyone!

Saturday, May 1, 2010

cried in preop

Rotor cuff surgery is not major stuff Buy the healing can take 12 weeks. no driving for 4 weeks at least and this stupid black sling for at least 4 weeks. This was my 13th surgery. I cried while in pre-op...why? For the first time I have no parents to tell me it would be okay . No pink roses waiting for me when I woke signed, "Kid, we love you,get well soon, WCD." Death took Daddy 8 months ago and the Alzheimer's has it's horrible hold on Beverly.
I haven't seen my mother since the good visit on her birthday last month. I am afraid that it will be another nasty one.. So I am holding onto the sweetness of last time.
My son Stewart has decided to go to law school, he is almost 33, he has not been in college since he received his BS in 2000. He and Carolyn will be leaving the area I'll miss them and that will make Mom's world smaller, another loss. Joe and Stewart take her out to dinner every other week. It has become part of her routine. Maybe I'll go sometime...in the summer.
I miss my parents mostly Daddy, having both parents a live at my age 59 was uncommon. Now wherever I go I run into someone else who has one deceased parent and one with Azheimer's. we are a growing number! and we all agree Alzheimer's is horrid!

Friday, April 23, 2010

Praise The LORD!

IT took every bit of courage to drive to my mother's nursing home yesterday to celebrate her 85th birthday . I bought her yellow roses picked up a dear friend and off Debbie and went. We prayed in the parking lot that Mother would be in a good place to see me.
When we walked in the lobby I asked the receptionist to call Beverly's floor. She did. The nurses told her to send me up. The walk to the elevator and the ride up 2 floors had my stomach in knots.
When the elevator door opened I saw my Mom the same time she saw me. She jumped and "ran" ( as much as an 85 year old woman can) to me," hugged me, told me she loved and that she missed me. We spent the next hour holding hands and talking about silly things.
We kissed good bye and I told her I would be back the next week. I thanked the nurses for their care of my mother and they all had tears in their eyes.
The Lord really worked a miracle!
Just so you know I am well aware that this may or may NOT happen next time but for now I hold the visit close to my heart and Praise God for this gift!

Thursday, April 22, 2010

Beverly's Birthday today

For as long as I can remember Daddy and I made sure one of us gave my mother yellow roses on her birthday. When I was very little we lived around the corner from a flower shop. I would take my change from soda cans and buy one yellow rose for Mom.
My sons have told me again my name brings out the worse in her.
I just called the nursing home and was told it would be better not to see her today. So why does that hurt so much? She has been a less than great parent all my life. She treats me like I have no value so why should I be in tears that she does not want a visit?
My lovely niece got married Saturday. Ryan, her new husband is great as are the members of his family. Sadly his 68 year old Dad has recently been diagnosed with this horrible disease. We spoke briefly about his Dad getting better and I had to tell him the honest truth that is is a one way path to hell.
Every time I have to deal with something to do with this disease and my mother my stomach hurts and I shake!
I guess that is why I call this blog, "Alzheimer's is HORRID!" because it is!

Friday, April 16, 2010

On vacation

I reside in upstate NY but for the next 6 days I am in my home state of Southern California. Brad, Heather, Rachel and I flew in Thursday for a wedding and are staying with my "sister" of choice, Krissy. We have been friend for almost 50 years.
As I was getting ready to head out I realized I had to call the nursing home to make sure, God forbid, if anything happened to my mother while I was on the opposite side of the country that someone could take care of things.
I could not get hold Joe the oldest. That left Stewart, I called him and he is fine with be my fill in.
Odd the last time I flew into LAX was to go to Az. and bury my Dad and pick up Mother to bring to back to NY with me. Every time I think I will be okay with his death and Mother's Alzheimer's I realize my heart breaks.
My Dad's ashes are here at Krissy's home waiting for us to take him to San Diego so he can be buried at sea. Seeing his remains in the putter container has made me very sad and very reflective. Daddy was the best part of my life from the time I was 10 years old until when he left us last July.
Now I am left the dreams mostly they are rehashed events with my mother. Don't get me wrong there were some sweet times but she was pretty negative I was never smart enough, thin enough pretty enough..you get the drift.
I have spent my parenting years doing my best to let my children know they are MORE than enough. Each one has gifts and talents and I would like them and love them even if I had not been their Mom. When I have been angry or "short" or as the first 3 have become adults I have stepped over the boundaries I have not hesitated to apologize for being wrong.
When I reflect on my childhood with Beverly and the situations that she put be in that led to me being sexually abused etc. I realize I deep inside always thought just maybe she would say she was sorry.
That will never happen now. There are times when I know I have forgiven her but every once in awhile I think to myself,"what would it have been like to have a Mommy that ws always there and nurturing instead of a Mother whoprovided a home and food but no emotional supoport. A woman who could be "Donna Reed" to late now; I will be 60 in a few months. My past with Beverly can not be changed and the future is grim. I need to come to terms with the fact that who I am is because of what happened to me. There was no Donna Reed Mommy in my childhood.
I had a fill in Mommy for the last 7 years , sadly she just past. I often wondered what it would have been like to be raised by her...
Blogs I think are for the writers more than the readers so forgive me for going on and on. Others have gotten up so we must get ready for the day and the wedding events.

Tuesday, April 13, 2010

her birthday

April 22 nd will be Mother's first birthday without my Daddy in 50 years. Since she seems to be okay with my sons I am hoping they will meet me at the nursing home to take her out to lunch. It is odd not hearing form her or seeing her. But when she was in AZ. with Daddy it was him who I emailed every day and spoke with 3 times a week. My mother would get on the phone and say hi then hand it to Daddy.I would fly from NY to Az. about every 16 months and after just 3 days I was a wreck . Mother has always "torn" me apart verbally. This isn't to much different just Daddy's not around to run interference. I am finding that there are many others with parents, mostly Mom's , who have this horrid disease.
Joe said last visit Mother was "happy" and didn't cry. Her meds have been changed so maybe she will be okay with seeing me.... sigh

Monday, April 5, 2010

another holiday without....

Friday Rachel and I went to Ma. to one of the greatest fabric stores on the east coast. to pick out fabric for her bridesmaids and flower girl. Again a few years ago my mother would have joined for that then lunch. the mourning process is so hard..
I cried part of Saturday no Mom no Daddy.
You know it is hard enough not having Daddy around but Sunday all the kids were here for dinner and an Easter egg hunt. I wish I could have had my Mother here but I didn't dare not knowing what would come out of her mouth.
Joe got copies of "Still Alice" for myself and the other kids, Heather my 9 year old is reading it now? IT is an easy read only took about 4 hours but it is so sad and boy could I relate to the husband. If you haven't read it, find a copy.
Anyway...life goes on there are so many other things to think about but no matter how focused I am on the Lord or the other parts of my family Mother and her Alzheimer's is always in the back of my mind.
Does that ever change....

Wednesday, March 31, 2010

qustion

CAn anyone explain to me how to link to the many other bloggers who have information about Alzheimer's? Thanks

a phone call

My dear friends mother is near the end. She has been in a nursing home for years. Two years ago Sammie's mother no longer recognized her. Last night she called , her mother was being rushed to the ER. Sammie was in tears when she called me because the truth of the matter is it would be so much easier if her Mother went to the Lord. MY sweet friend feels so guilty about feeling that way but she has been walking with her mother and Alzheimer's for 10 years. She tells me she is now numb their is no more hurt or even sadness. IT is truly a horrible disease!
Today 2 of my sons will take my mother out to lunch or dinner. It is hardest on the oldest, Joe was always close to his grandparents. For me it is just sad, she and I used to love to go out to lunch.
My oldest daughter is getting married in 5 months, I am having surgery next month...life is continuing and she no longer can be a part of any of it. That feels so heavy on my heart. Her anger is more than I can deal with and the words are not a big deal on their own it is just so out of character for her. My heart aches.

Monday, March 29, 2010

orphaned

I went to the ortho surgeon today and need surgery on my rotator cuff. The healing takes awhile and because of the the size of the tear I will be out of commission for 3 months.
The part that is the hardest is for all my life when there was any kind of medical thing. having babies, losing babies, surgery of any kind I would pick up the phone talk to Daddy first then my Mother, who had been nursing since the beginning of time.I can't talk to either and I miss them so much. I am an orphan....

Sunday, March 28, 2010

pictures

Brad decided to start going through the garage full of my parents stuff there are tons and tons of boxes. The first to go through was a box of photos that hung all over my parents house in AZ. Funny how when you look at what others save it seems like just maybe there was a time when all was well with everyone. Also I realize there are a lot more photos of Joe who is my oldest than any other person around, Stewart and Heather the middle and last not so much and Rachel the first girl a few more.
There were photo of mothers father, mother and her sister too, those are all sepia tone and very faded. There is one of my mother's mother, Nina, ( who also had Alzheimer's) that was "painted" over to be color, it is very pale now but the color is still there.
I guess I''l have one of the boys take a few of them down to her in the nursing home they might give her some comfort. Knowing that I can't just drop by and give her these is hard. These are little things but they make me so sad.
The boys (41 and 33) are having are hard time too. This is not the grandma that they knew but at least she is sweet to them. Joe says the "loop" of her conversations drives him crazy but he still sees her once or twice a week. She enjoys his visits the best he stays more than an hour each time. I think it is because Joe was little during her happiest time. It is sweet for her.
She apparently dismisses Carolyn and Stewart after about 20 minutes. They would go to see my parents in Az. about every 9 months because Carolyn's family is in the west. They saw Daddy and Mother 2 weeks before Daddy died. I think somewhere in her mind Mother knows that and doesn't want to remember.

Saturday, March 27, 2010

the hope

My sweetie and I watched "The Time Travelers Wife" last night. Dreams are amazing the movie and yesterdays events with my mother all melted together. I woke up crying. What if you could really go back and forth in time? What if you could find the sweet moments and relive them ? What if Alzheimer's had never invaded Beverly's mind? I won't allow Heather to go see her again... my sweet little girl was so hurt by Beverly swearing and saying mean things about me. So now at 9 Heather has no grandmothers. Such a loss for both of them....

Friday, March 26, 2010

the visit and the tears

So I gathered 2 friends and my sweet 9 year old Heather and off we went to see Beverly. Calling her Mommy which to me implies a loving person or Mother which to me implies at least someone who cares no longer fits this woman who gave birth to me. Beverly is all that is left. Anyway. I sent the troops to the second floor loaded with all kinds of thought out gifts. Then I headed to the lovely lobby.
I half hoped there would be a page for me to rush up and see this woman who gave birth to me. Instead and sat and thought and spoke with the receptionist and cried.
Then the intake nurse arrived who had done Beverly's interview at our home just a little over 2 months ago so that I could place her in this nursing home. She assured me , as all health care providers seem to do, that it is the disease. Even knowing that does not keep it form breaking my heart.
Jackie assured me I was a good daughter and that I had to accept she would only get worse. Dam it I hate Alzheimer's!!!!
After an hour the troops returned I could tell by their faces it did not go well. Heather had tears in eyes and rushed to hug me. Where was her "good Grandma," I wanted to scream "SHE"S GONE FOREVER but I didn't we just held each other and cried. It seems Beverly who always thought any woman that swore was horrible used several words to Heather and the others letting them know I was no longer her daughter and that I obviously did NOT love her because she is now in a prison.
WHY???? Science can clone a sheep replace numerous body parts but why can't they fix the brain?????
She was not the Donna Reed Mom that my other friends had,she was divorced in 1953 not cool to be Catholic and be divorced, she worked 2 jobs. She was beautiful, tiny with a long red pony tail to her waist, she was stuck with me. There was no family to help so she left me alone to tend myself from the time I was 3 until I started school. There was no social service or daycare I really raised myself. I promised my self early on that I would be the Mommy that I dreamt about her being.
Skip to the man I called Daddy for 50 years. BOY do I wish he was still here then she would be with him and I could believe it was all okay again. Truth hurts and this disease is HORRID!

The shock of Alzhimer's!

Why the blog? Maybe some one out in "blog land" has been down this path. It is rocky step messy and very hard. Alzheimer's is divided into levels she is 2 and almost 85 she is very healthy otherwise and could easily live to be 100. To watch this woman who was so active and alive disappear into a fog is beyond painful!
I have been using facebook for the last 8 months to chronicle the death of my Daddy and the craziness that my Mother has brought to my calm peaceful life!
My friends and family are trying hard to understand. What a surprise it was to go to close up my parents house in Az. and bring my 84 year old mother back to NY. Forget the financial disaster my wonderful Daddy left. Mother (Beverly) was in shock, of course, but all of us are in upstate NY so there was no alternative other than to bring her here with us. Us, being my wonderful husband, Brad, myself, the youngest of our 5 kids and only one left at home, Heather ( 9).
Within a few days I realized Mom truly did have Alzheimer's . Daddy had said she was having some "issues" BUT he forgot to say in our daily emails and every other day phone calls that my mother had moved into a different world mentally.
After 6 months of living with us. The disease began sucking of total every once of energy and being more and more mean 2 months ago today placing her in a nursing home was the only choice.It was not an easy thing to do. BUT my family was starting to fall apart. Alzheimer's is Horrid. I am not sure what it is like in the brain of one who has it but I know what hell it is for the family who has a member with he disease.
She has made it clear she hates me right now. Again it is the disease, it still hurts.
Heather has off today. Her other grandma passed away a month ago and she really wants to see my Mother. I am gathering 2 friends and we are bringing in goodies to her. I'll sit in the lobby while they visit. Will she even remember Heather? I have warned Heather she might not, will she remember the others with her who she met while living with me, who knows.
A few days ago I spoke with the charge nurse, Cindy, she has said that Mom is now hanging out in the "common" room and smiling and talking . Then a few times a day she clouds over cries and tells them all how horrible am to have done this to her and that my Daddy would be very angry.
I spoke with my Dad the day he died and his last words were to extract a promise that I would take care of Mom no matter what. I did and still am I have her POA. As any one knows that can be a pain especially regarding any finances.
I was inspired to do this after seeing "Julie and Julia". The Lord has been with me though this and sharing that might help others. Bottom line as I say on a regular basis Alzheimer's is horrid!
Say a pray cross your fingers, I'll let you know how the visit goes.